COVID-19 Advice

NORTH WEST, NORTH WALES AND ISLE OF MAN CONGENITAL HEART NETWORK

Advice for patients and families affected by congenital heart disease and children with other heart conditions

Updated Consensus Statement 5th January 2021

We appreciate that patients and families will continue to be anxious about the ongoing coronavirus pandemic. We would advise that everyone regardless of their age follow the advice being provided and updated regularly on the NHS and Government websites. The coronavirus pandemic (COVID-19) has affected a large number of people over the previous months. There remains very little evidence relating to patients with congenital heart disease (CHD) and the risks of infection with this new virus. So far, it appears that most children with CHD are unlikely to be at any greater risk of COVID-19 than those in the general population. Evidence from around the world suggests the disease is much milder in children and, in fact, some may show no significant symptoms at all. The risk of becoming very unwell due to COVID-19 is very low for children and younger adults.

There are three simple actions we must all do to keep on protecting each other

Wash Hands
Keep washing your hands regularly

Cover Face
Wear a face covering in enclosed space

Make Space
Stay at least 2 metres apart – or 1 metre with a face covering

Stay at home if you or your child have any of the symptoms listed below and arrange a test as soon as possible

Most people will have mild symptoms and will recover from this virus without needing to attend hospital. It is likely that you will have at least one of these symptoms:

  • a high temperature – this means you feel hot to touch on your chest or back (you do not need to measure your temperature)
  • a new, continuous cough – this means coughing a lot for more than an hour, or 3 or more coughing episodes in 24 hours (if you usually have a cough, it may be worse than usual)
  • loss or change to your sense of smell or taste – this means you’ve noticed you cannot smell or taste anything, or things smell or taste different to normal

You Must

  • Self-isolate for 10 days if you have symptoms or until your temperature has settled.
  • If someone in your household has symptoms you should self-isolate for at least 10 days. You may need to self-isolate for more than 10 days if you get symptoms while self-isolating or your symptoms do not go away. Read more about how long to self-isolate.
  • If you develop symptoms arrange to get a test as soon as possible after your symptoms develop
  • If you are contacted by the “Track and Trace” system and told that you have been in close contact with someone who has recently tested positive for COVID-19 you will also need to self isolate

Self-isolation is when you do not leave your home because you have or might have coronavirus (COVID-19).  This helps stop the virus spreading to other people. It’s a legal requirement to self-isolate if you test positive or are told to self-isolate by NHS Test and Trace. You could be fined if you do not self-isolate.

Self-isolation is different to:

  • social distancing – general advice for everyone to avoid close contact with other people
  • shielding – advice for people at high risk from coronavirus

Check your symptoms:

https://111.nhs.uk/covid-19

For advice about what to do and how to arrange a test:

https://www.gov.uk/get-coronavirus-test

Self Isolation Guidance:

https://www.nhs.uk/conditions/coronavirus-covid-19/self-isolation-advice/

Get an isolation note: You don’t need to get a note from your GP if you have been asked to self isolate or develop symptoms of COVID-19. You can get a self isolation note by clicking on the link below 

https://111.nhs.uk/isolation-note/

What support is available to help you self isolate: People are required by law to self-isolate from 28 September 20.  Support is available for those on lower incomes who cannot work from home and have lost income as a result.

https://www.gov.uk/government/news/new-package-to-support-and-enforce-self-isolation 

Social Distancing:

https://www.gov.uk/government/publications/coronavirus-covid-19-meeting-with-others-safely-social-distancing

How to wear a face covering safely (film by the BBC):

https://www.youtube.com/watch?v=NMSqc9SpbJc

This advice is changing regularly. This advice is likely to change both locally and nationally depending on the level of the virus where you live.  You are advised to check this regularly. Please note there is different advice depending on whether you live in England, Wales or The Isle of Man:

What you can and cannot do:

In England (Link to be attached to England)

https://www.gov.uk/guidance/local-restriction-tiers-what-you-need-to-know

What you can and cannot do:

In Wales (link to be attached to Wales)

https://gov.wales/coronavirus

What you can and cannot do:

In the Isle of Man (Link to be attached to Isle of Man)

https://covid19.gov.im/general-guidance/ 

Link to local lockdown advice: Please consult your local lockdown guidance to see what restrictions are in place where you live. Enter your post code to find out

https://www.gov.uk/find-coronavirus-local-restrictions?priority-taxon=774cee22-d896-44c1-a611-e3109cce8eae

Please do not attend unannounced at any of the hospitals that provide care for patients with congenital heart disease or go directly to your GP practice, A+E or pharmacy

  1. If you or your child’s symptoms get worse and you cannot cope at home then go to NHS 111 online and complete an online assessment
  2. If you do not have access to the internet, phone 111 directly
  3. You may be on hold for a long time. Be prepared to wait and keep your phone charged up
  4. Explain that you or your child has an underlying congenital heart problem. Please take a copy of your last clinic letter with you. Our NHS is extremely skilled in looking after sick patients and it will help them to look after you or your child safely if they have this information. They can call the “on-call” congenital heart team for advice 24/7 via the switchboards listed below:
    1. Alder Hey Children’s Hospital: 0151 228 4811 (paediatrics)
    2. Manchester Children’s Hospital: 0161 276 1234 (paediatrics)
    3. Liverpool Heart and Chest Hospital : 0151 600 1616 (adults)

Emergency Warning Signs

If you develop any of the following emergency warning signs for COVID-19 please seek medical attention immediately by calling 999

  • difficulty breathing or shortness of breath
  • persistent pain or pressure in the chest
  • new confusion or inability to rouse
  • bluish lips or face

For Babies and Children:

  • Call 111 if you’re worried about a baby or child under 5.
  • If your child seems very unwell, is getting worse or you think there’s something seriously wrong, call 999.
  • Do not delay getting help if you’re worried.
  • Trust your instincts.

Click here for advice about what to do if you are worried that your child may be very ill
https://www.nhs.uk/conditions/coronavirus-covid-19/symptoms/coronavirus-in-children/

The Royal College of Paediatrics and Child Health (RCPCH) has also produced a useful to guide to help parents know when to seek help for their child when they are unwell. Please see the attached poster:
https://www.rcpch.ac.uk/sites/default/files/2020-04/covid19_advice_for_parents_when_child_unwell_or_injured_poster.pdf

The NHS is still able to provide urgent care Please attend A+E for other emergencies as normal

  1. For all other health information and advice, use the NHS website or check your GP surgery website
  2. For urgent medical help, use the NHS 111 online service. Only call 111 if you’re unable to get help online
  3. For life-threatening emergencies, call 999 for an ambulance
  4. If you think that the symptoms may be due to you or your child’s congenital heart problem make sure you are clear about this when you arrive. Ask the A&E staff to liaise with the congenital heart team for advice who are on call 24/7. Particularly if they are considering putting you in a ward with other people who may be ‘breathless’ because of COVID-19
  5. If you need non-urgent advice regarding you or your child’s congenital heart condition please contact your CHD helpline to speak to one of the Nurse Specialists

Please see below the guidance published by the British Congenital Cardiac Association (BCCA) together with Clinical Reference Group (CRG) and NHS England. Patients with congenital heart disease should continue to follow government advice with regards to COVID-19.

BCCA guidance:
http://www.bcca-uk.org/documents/my_files/FDA_BCCA_COVID-19_updated_guidance_national_lockdown_for_England_-11_November_2020.pdf

Expert doctors have identified certain medical conditions that place someone at greatest risk of severe illness from COVID-19. Clinically extremely vulnerable people may include the following:

  1. Anyone who has had a solid organ transplant
  2. People with specific cancers:
  3. People with severe respiratory conditions including all cystic fibrosis, severe asthma and severe chronic obstructive pulmonary disease (COPD).
  4. People with rare diseases that significantly increase the risk of infections such as severe combined immunodeficiency (SCID), homozygous sickle cell.
  5. People on immunosuppression therapies sufficient to significantly increase risk of infection.
  6. Adults with Down’s syndrome
  7. Adults on dialysis or with chronic kidney disease (stage 5)
  8. Pregnant women with significant heart disease, congenital or acquired

The following patients with congenital heart disease are also thought to be clinically extremely vulnerable:

  1. Patients with severe high blood pressure in their lung arteries and who are taking special medication to treat this.
  2. Patients who have been accepted for an organ transplant and are on the active transplant waiting list.

If you’re at very high risk (clinically extremely vulnerable) from coronavirus (COVID-19), there are things you can do to help keep yourself safe. There is some extra advice depending on where you live and whether there is a national lockdown in place. In places where there is a very high risk from coronavirus, you may get a letter advising you to follow stricter advice. This is called shielding. You only need to shield if you get a letter or if your Congenital Heart Specialist has advised that you do this.

Check the COVID alert level of your local area or search by postcode

  • There may at times be a national lockdown where the advice is the same throughout the country
  • The advice sets out the additional things people at the highest risk from COVID-19 are advised to do to keep themselves safe for each tier.

What Support is available for those advised to shield?

  • NHS Volunteer Responders will carry on delivering food , prescriptions and essential items to you if you need it. If you have not registered before you can self refer for this support at any time. To arrange support for yourself or someone you know call 0808 196 3646 (8am to 8pm, 7 days a week).: 

https://volunteering.royalvoluntaryservice.org.uk/nhs-volunteer-responders-portal

  • You may be eligible for Statutory Sick Pay (SSP), Employment Support Allowance (ESA) or Universal Credit. Other eligibility criteria will apply 
  • The formal shielding letter that you receive should act as evidence for your employer or the Department for Work and Pensions (DWP) that you are advised to not work outside of your home for the period stated in the letter.
  • If you cannot make alternative arrangements, your employer may be able to furlough you under the Coronavirus Job Retention Scheme, which has been extended until the end of April 2021. You should have a conversation with your employer about whether this is possible.
  • If you have concerns you can get advice on your specific situation and your employment rights by visiting the Acas website or calling the Acas helpline on 0300 123 1100.
  • If you need support to work at home or in the workplace you can apply for Access to Work. Access to Work will provide support for the disability-related extra costs of working that are beyond standard reasonable adjustments an employer must provide.
  • You should continue to seek support from the NHS for your existing health conditions. You can access a range of NHS services from home, including ordering repeat prescriptions or contacting your health professional through an online consultation. To find out more visit www.nhs.uk/health-at-home, or download the NHS App
  • It is also important to look after your mental health. Go to the Every Mind Matters website for advice and practical steps that you can take to support your wellbeing and manage your mental health during this pandemic.

For more detailed advice click on the links below

In England (Link to)

https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19

in Wales: (Link to)

https://gov.wales/guidance-shielding-and-protecting-people-defined-medical-grounds-extremely-vulnerable-coronavirus-0

In the Isle of Man: (link to)

https://covid19.gov.im/general-information/vulnerable-groups/

The UK Chief Medical Officers have issued a statement on schools and childcare reopening which states that there is a very low rate of severe disease in children from COVID-19. Schools have their own measures in place to limit the risk of transmission which can be found in guidance on opening of schools.

All pupils and students should continue to attend education settings at all local COVID alert levels unless there is a national or local lockdown advising that schools and colleges should close or you are one of the very small number of pupils or students under specialist care and have been advised by your GP or clinician not to attend an education setting.

There is no evidence that pregnant women are more likely to get seriously ill from coronavirus.  Pregnant women should follow the latest Government guidance on staying alert and safe and avoid anyone who has symptoms suggestive of coronavirus. If you are in your third trimester (more than 28 weeks’ pregnant) you should be particularly attentive to social distancing.

Pregnant women with significant heart disease have been classed as extremely vulnerable. You will have been advised of this by your medical team.  It is important that you follow the advice for the extremely vulnerable according to the alert level where you live. 

What is a significant heart disease

  • Impaired left heart function (any cause)
  • A systemic right ventricle (congenitally corrected TGA, Senning/Mustard surgery for TGA) even if well-functioning
  • Hypertrophic cardiomyopathy with abnormal heart function and/or outflow tract obstruction
  • Heart disease due to high blood pressure with thickening of the muscle on the left side of the heart
  • Fontan circulation
  • Pulmonary arterial hypertension (any cause)
  • Cyanotic conditions ie saturation in air < 92%
  • Moderate or severe valve stenosis (narrowed)
  • Severe valve regurgitation (leaking) and moderate if symptomatic
  • Symptomatic coronary artery disease

For further information and answers to questions for pregnant ladies please refer to the guidance that has been published by the Royal College of Obstretricians and Gynaecologists. 

https://www.rcog.org.uk/en/guidelines-research-services/guidelines/coronavirus-pregnancy/covid-19-virus-infection-and-pregnancy/ 

Those patients with Brugada Syndrome or Long QT Syndrome (Type 3) will be at increased risk from COVID-19.  This is because fever can induce dangerous rhythms. There is no evidence that this is any different to the risk caused by other illnesses that result in a high temperature. 

There appears to be no increased risk for all other patients with rhythm problems  including:

  • Long QT Syndrome
  • CPVT
  • Patients with congenital heart block 
  • Patients with a permanent pacemaker who have a normal heart

Patients were previously advised to shield during the first wave of the COVID-19 pandemic.  Consequently in March, the UK centres all agreed to suspend blood testing for everyone prescribed an Endothelin receptor antagonist (Ambrisentan, Bosentan or Macitentan).

Your monthly regular blood testing should have been re-instated from the beginning of August 2020. It is important to follow the current advice for those who are clinically extremely vulnerable.

New Guidance on blood tests from 1st August:

  • Bosentan (Tracleer and generic brands) – Monthly liver function test and 3-monthly full blood count
  • Ambrisentan (Volibris®) – 3-monthly liver function and full blood count
  • Macitentan (Opsumit®) – 3-monthly liver function and full blood count

For general advice relating to patients with Pulmonary Hypertension and coronavirus please visit the PAH-uk website:

https://www.phauk.org/coronavirus-pulmonary-hypertension/

The coronavirus (COVID-19) vaccine is safe and effective. It gives you the best protection against coronavirus.

The NHS is currently offering the COVID-19 vaccine to people most at risk from coronavirus.

The vaccine is being offered in some hospitals and hundreds of local vaccination centres run by GPs.

For detailed information about the vaccine click here https://www.nhs.uk/conditions/coronavirus-covid-19/coronavirus-vaccination/coronavirus-vaccine/

Outpatient Clinics

DO NOT come to out-patient clinic if you or your child have a new cough and/or a temperature or have been in contact with anyone with coronavirus symptoms. Please phone your patient help-line to inform them that you are unable to attend.

All patients due to be seen in an outpatient clinic are being reviewed and cases prioritised by a consultant who specialises in congenital heart disease. This is likely to be the consultant that knows you or your child well. Hospitals have restored most of the routine clinic activity that was initially delayed or cancelled because of the pandemic. This will enable more complex patients who need an ECG and ECHO to be seen back in clinic. Both paediatric and adult services are continuing to provide urgent clinics each week for patients who are unwell. Although it is important that  clinic activity is restored it is imperative that it is done safely. This means that capacity to see everyone remains lower than normal.  The following guidance will apply

  • The number of patients in each clinic will be smaller to enable staff and patients to adhere to strict social distancing
  • For those patients who have been advised  to  “shield” staff will do whatever they can to limit the time that you need to be in the department
  • You will notice that staff will be wearing personal protective equipment
  • You and everyone with you will also be expected to wear a face covering when visiting the hospital.
  • Equipment e.g. ECHO machine will be fully cleaned inbetween patients.
  • Children should attend with only one parent or carer and adult patients should attend alone or if they require support with a maximum of one other adult. 
  • Special consideration and adjustments may need to be made if a patient with learning difficulties or special needs require more than one person to support them. Please call your helpline ahead of your appointment if you feel this may be required so we can make appropriate adjustments
  • Please call  your Congenital Heart Team via the  patient helpline if you have any concerns and especially if you cannot make your appointment. 

All routine surgical and catheter intervention procedures for congenital heart disease were cancelled across the North West of England in response to the pandemic. Emergency operations and catheter procedures continued to be performed as needed.  Routine procedures and operations have been restarted and are now back up to normal levels. The numbers of cases that can be done each week is reduced however due to the need to adhere to social distancing rules etc. Therefore there is a back log and waiting times are likely to be longer than normal. However this is gradually improving. 

What to expect: 

It is important that you or your child and the staff looking after you are kept as safe as possible. Therefore there will be new safeguards put in place to minimise the risk from COVID-19 

  • You or your child will be pre-admitted prior to your operation or procedure as normal.
  • Some of your appointments may be done using a virtual platform called “Attend Anywhere”. You will receive specific instructions about how to use this technology. 
  • The Congenital Heart Nurse Specialist will give you specific advice as to what will happen to you or your child and will discuss any special measures that are needed for you
  • This may differ slightly between the paediatric and adult hospitals but may include one or more of the following:
    • You or your child may need to be swabbed for COVID-19. If you live a distance away from the hospital you can call NHS 119 to arrange to have your COVID-19 test done locally 
    • You may be asked to self isolate prior to your operation or procedure. The Nurse Specialist will explain if this is required and for how long this is necessary prior to being admitted
    • You may need to be admitted for several days beforehand in order to be re-swabbed

When travelling to a hospital appointment, patients should follow the general advice on safer travel, available here: https://www.gov.uk/guidance/coronavirus-covid-19-safer-travel-guidance-for-passengers

If possible you should use your own transport. However, if this is not possible and especially if you have previously been told to shield please call the Nurse Specialists to discuss what can be done to help you attend your appointment safely.

Healthwatch has some useful general information for patients and families about help with travel which is available here: https://www.healthwatch.co.uk/advice-and-information/2019-09-26/do-you-need-help-travelling-nhs-services

DO NOT visit anyone in hospital if you or anyone that you live with have a new cough and/or a high temperature and/or a loss of taste or smell or have been in contact with anyone with coronavirus symptoms 

In order to protect patients, staff and the public, hospitals have specific visiting arrangements in place. In order to support patients to maintain contact with loved ones, the option of virtual visiting is available in most hospitals. Please check visiting arrangements before you try and visit your loved one. 

Alder Hey Children’s Hospital

https://covid19.alderhey.nhs.uk/visiting-alder-hey/

Liverpool Heart and Chest Hospital

https://www.lhch.nhs.uk/about-lhch/coronavirus-information-hub/visiting-lhch/

Manchester Foundation Trust

https://mft.nhs.uk/mri/patients-visitors/visitors/visiting-times/ 

We understand that this information may cause you to be worried and anxious. Please call your Congenital Heart Team via the patient help line numbers below if you have any questions about how this might affect you or your child’s care. 

If you are concerned that you or your child has new symptoms related to your congenital heart problem please contact the Congenital Heart Team on the numbers below to discuss with a Specialist Nurse. We will make sure that patients who need to be reviewed urgently will be seen appropriately throughout the CHD Network during this pandemic

How to contact the Congenital Heart Team if you have any further questions:

Paediatrics Helplines:

Alder Hey Children’s Hospital: 0151 252 5291

Royal Manchester Children’s Hospital: 0161 701 0664

North West Adult Congenital Heart helpline:

Liverpool Heart and Chest Hospital: 0151 254 3333

ACE Inhibitors or angiotensin receptor II antagonists

Many patients with CHD or chronic heart failure may be on ACE inhibitors (e.g. Ramipril, captopril, lisinopril, enalapril), angiotensin receptor II antagonists (e.g. losartan, candesartan)  The British Cardiac Society, British Society for Heart Failure and European Society of Cardiology Council on Hypertension have said that there is no clinical or scientific evidence to suggest that treatment with an ACE inhibitor should be discontinued because of COVID-19. Stopping these medications may cause worsening of your heart condition. 

Aspirin

Our recommendation is that patients who are taking aspirin continue on their treatment unless advised differently by their cardiac team.

Use of paracetamol versus ibuprofen 

Although there is as yet no firm evidence, patients should use paracetamol rather than ibuprofen or other non-steroidal anti-inflammatory drugs (NSAIDs) to control fever and pain.  

Removal of the Thymus 

The thymus gland is routinely removed during some forms of cardiac surgery where the scar is at the front of the chest. There is no evidence that this constitutes an additional risk for infection.

Can COVID-19 trigger a Kawasaki like syndrome?

Most children are asymptomatic or exhibit mild symptoms from COVID-19 infection. However, a small number of children have recently been identified who develop a significant systemic inflammatory response. The Royal College of Paediatrics and Child Health have issued a statement stressing that it remains unclear whether paediatric multi-system inflammatory syndrome is caused by COVID-19 and reiterates that it has affected an extremely small number of children in the UK and throughout the world. It remains extremely unlikely that a child will become unwell with COVID-19, and it’s even more unlikely that a child will become unwell with this condition. If you have an unwell child, it probably isn’t anything to do with COVID and is more likely to be something else. 

The Royal College of Paediatrics and Child Health (RCPCH) has produced a useful to guide to help parents know when to seek help for their child when they are unwell. Please see the attached poster:

Poster

https://www.rcpch.ac.uk/sites/default/files/2020-04/covid19_advice_for_parents_when_child_unwell_or_injured_poster.pdf

Get the latest NHS advice about coronavirus:

https://www.nhs.uk/conditions/coronavirus-covid-19/ 

Coronavirus (COVID-19): UK Government Response:

https://www.gov.uk/government/topical-events/coronavirus-covid-19-uk-government-response

The Children’s Heart Federation:

https://www.chfed.org.uk/

The Somerville Foundation: 

https://thesf.org.uk/help-advice/coronavirus/

MIND:  Looking after your mental health and well-being:

https://www.mind.org.uk/information-support/coronavirus-and-your-wellbeing/?fbclid=IwAR3hpzrVMUiwXxqvtskEtR832pYvOIruVx4wPSNcknjos9dWewU-PxxnXUc#collapse6a046

The Faculty of Sexual & Reproductive Healthcare:  Advice for women seeking contraception, abortion and other sexual and reproductive health care

https://www.fsrh.org/documents/fsrh-guidance-contraceptive-provision-changes-covid-lockdown/

Advice for Families from RCPCH:  PIMS: the COVID-19 linked syndrome affecting children – information for families

https://www.rcpch.ac.uk/resources/pims-covid-19-linked-syndrome-affecting-children-information-families

Education and childcare : Guidance for teachers, school leaders, carers, parents and students

In England:

https://www.gov.uk/coronavirus/education-and-childcare

In Wales:

https://gov.wales/education-coronavirus

In Isle of Man

https://covid19.gov.im/SearchResults/?s=schools

Helpful Videos to Watch

COVID-19 & Anxiety – Tips on How to Manage

COVID-19 Q&A’s with ACHD Psychologists

A Special Thank You from Our ACHD Patients

Cardiac Appointments – August 2020

CHD + COVID 19 Update & Advice – August 2020

How to contact the Congenital Heart Team if you have any further questions

Paediatrics Helplines

Alder Hey Children’s Hospital: 0151 252 5291
Royal Manchester Children’s Hospital: 0161 701 0664

North West Adult Congenital Heart Helpline

Liverpool Heart and Chest Hospital: 0151 254 3333

COVID-19 Advice for North West CHD Network: Advice for patients and families affected by congenital heart disease and children with other heart conditions pleaseclick here